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“For many people, remote work isn’t just about better work-life balance; it’s about allowing more time for the uncompensated caregiving work that millions provide for America’s young, sick, elderly, and disabled.” From Instagram post, The Atlantic magazine, 9/5/23
Does this describe you and your family? I provide “uncompensated caregiving work” for my son who has a disability. And for seven years, I also took care of my husband, who was ill.
I am thankful that I was able to work remotely, even before COVID hit and changed the way many of us work, including people with disabilities.
It’s not easy to provide caregiving, even under the best of circumstances. There are caregiving gaps in our systems of care, and many of us need to fill in those gaps by juggling work and care.
We hope this issue affirms you in your caregiving role and brings to our awareness the unique opportunity that remote work plays in providing for our families as well as the need for systemic change in providing care for our loved ones with disabilities.
We will also highlight how remote work options encourage people with disabilities to work. See Christina Eisenberg’s article below on the importance of remote work for people with disabilities.
Please see the information appearing at the end of the newsletter for three important October events!
Best to you and yours,
Maria Schaertel
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Remote work opens doors for people with disabilities | |
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By Christina Eisenberg, Director, Employment Equity, Starbridge
Remote work opportunities are crucial in creating an equitable society. Remote work provides opportunities for individuals with disabilities to truly showcase their talents and abilities with less barriers to success, i.e. transportation, accessibility etc. Individuals are able to work in their own environments with less need for adaptation. It allows for the betterment of their livelihood by providing income, access to healthcare, and ability to contribute their skills in society.
As we approach National Disability Employment Awareness Month, it is also important to note the value of remote work for employers. Employers who provide remote opportunities broaden their reach to access qualified individuals who are creative and forward thinking simply from having to strengthen these skills in their daily lives. Individuals with disabilities are an untapped market that add tremendous value in the workplace and can increase the consumer market for employers to include others with disabilities.
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Remote workers provide caregiving across the country, including Starbridge | |
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“Work from home jobs for caregivers have been on the rise in recent years, and for good reason. A recent study by Mother Honestly and Care.com found that 73% of caregivers use the time they save from working from home to care for their children, and 70% use it to spend more time with their partner or spouse. This report shows that remote work can be vital for work-life balance.”
“Additionally, managers and caregivers are on the same page when it comes to remote work. The study found that 77% of managers and 76% of caregivers agree that remote work improves workers' overall quality of life. This is a significant shift as it shows that remote work has finally proven itself after three years of uncertainty from leaders.”
From New Research Shows Remote Work Essential For Caregivers
Ida Jones, Starbridge Vice President, Organizational and Workforce Development /HR, describes Starbridge’s views on remote work:
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Providing remote and hybrid work for our staff is a game changer for Starbridge. It gives us a strategic advantage for the reasons cited in the research.
- Staff routinely share appreciation for their ability to exercise some control of when they work, understanding that they need to honor deadlines and supervisor requests, for example, when there is a need to be in the office.
- Caregivers have the opportunity to flex, accommodating family and other needs.
- Staff can take the opportunity for self-care, managing their work to help mitigate burnout and manage stress.
- We know the flexibility we provide supports recruitment and retention. From a recruitment perspective we can recruit talent knowing that location is not necessarily a barrier. And we know, with respect to retention, we can support employees who may need to relocate or have a change in circumstance that may impact their work-life balance.
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Family Caregiver and Advocate Voices Need for Family Support in NYS | |
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By Chris Palega, Family Support Services Advocate; Testimony provided in response to OPWDD’s (NYS Office for Persons with Developmental Disabilities) Strategic Plan, August 15, 2023
“Among many other contributions, family caregivers significantly reduce the demand on a system of more costly and more restrictive residential options that is currently overwhelmed. And, without compensation, we significantly reduce the demand for a paid DSP (Direct Support Professional) workforce that is severely understaffed; a workforce that some believe is on the verge of collapse.
At this point it is abundantly clear that we must effectively leverage our currently available resources in an effort to moderate the devastating impact of our monumental challenges.
Unfortunately, the plan fails to reveal a pathway to understanding how properly targeted investment in family caregivers, the largest sub-group of the direct care workforce, can return far more than any savings that might be realized by a reduction in state only dollar spend. And although many family caregivers are struggling, many in the community believe that we are still the most powerful resource available to address the current crises.”
To read the complete testimony, please click here.
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Remote Work and Caregiving Works for Mom and Son | |
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Julie Hartfield, Starbridge Family Education Specialist, describes how working from home allows her to take care of her son, Kai.
“Being a young adult isn’t easy, and it is especially challenging to be a young adult with disabilities. Helping Kai to realize it’s okay if you make a mistake, and it is okay to take a break are some of the lessons I am able to teach Kai at home. That is part of learning your limits and a part of self-care which is important for everyone! My son seeing me work from home has prompted him to start his day by choice a few hours after mine. It is really motivating him, and he is so independent!”
Kai is happy that Julie is available for him; “Even though he can cook, he prefers I cook lunch and dinner because I’m home!”
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Consumer Directed Personal Assistance Program (CDPAP): A way to be paid for caregiving your disabled child | |
- This Medicaid program provides services to chronically ill or physically disabled individuals who have a medical need for help with activities of daily living (ADLs) or skilled nursing services.
- Services can include any of the services provided by a personal care aide (home attendant), home health aide, or nurse.
- Recipients have flexibility and freedom in choosing their caregivers.
- The consumer or the person acting on the consumer´s behalf (such as the parent of a disabled or chronically ill child) assumes full responsibility for hiring, training, supervising, and – if need be – terminating the employment of persons providing the services.
Click here and go to Frequently Asked Questions for more information if you think you have an immediate need for Consumer Directed Personal Assistance Services and would like more information on how to get your eligibility processed more quickly for these services.
From https://www.health.ny.gov/health_care/medicaid/program/longterm/cdpap.htm
Parent and CDPAP advocate Doris Behan describes how the program works for her and her daughter, Sarah.
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I have been a paid caregiver for my daughter, Sarah. since April of 2016. It has been life-changing for both Sarah and me. This really became clear during the COVID pandemic. CDPAP allows me to be able to provide the care that Sarah requires — care that is reliable, safe, and provides the dignity that Sarah needs and deserves. This program allows her the choice to remain in her own home, and to live a life deserving of every human being. With all of Sarah’s medical needs, safety is of the upmost importance. When the pandemic hit, I pulled her from her day program, knowing that a congregate setting would be the worst situation for her to be in.
I just kept thinking that because of the CDPAP, I am able to keep her safe within the four walls of her home. This is how the program is supposed to work—and is a prime example of how state dollars can work for the greater good! It has also become our life line as Sarah’s health becomes more challenging as she ages. To be able to just focus on her and her health is what this program is all about.
Visit Doris’s Facebook group, A parent’s mission to keep their disabled adult child at home. Hold your family tight—For family means everything! Doris Behan
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Join in Al Sigl Center’s WalkAbout – Benefits all Member Agencies including Starbridge!
Join us on Sunday, October 22nd for a memorable morning of family-friendly, Halloween-themed fun along our indoor route at Eastview Mall and the grand finale – a costume contest you won’t want to miss! Check out the amazing costumes worn by walkers and rollers of all ages, or get creative and join in.
Check-in begins at 8:30AM in the Food Court near Entrance #5. The event kicks off at 9AM. The Costume Contest will begin at 10:00AM.
Don’t have your costume picked out yet? No problem!
Thanks to a generous donation we will be distributing FREE costumes to WalkAbout guests this year.
Click here to register and pick out your new costume to wear at WalkAbout! This costume is yours to keep. Please note, limited quantities and sizes available so don’t wait!
WalkAbout is a FREE event that brings together individuals and teams from each Al Sigl Member Agency to join with friends and neighbors from across the region.
Funds raised will help to support the more than 55,000 children and adults with special needs in our community served by Al Sigl Member Agencies each year.
For further information, please click here.
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